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For Pediatric Neurology Nurses-Some Questions About The Intricacies of The Profession

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I am currently working on a story for a creative writing class that details much of the intricacies of the nurse/patient relationship in a long-term pediatric hospital stay. The characters are a pediatric neurology nurse and an adolescent girl who is diagnosed with a Medulloblastoma. My goal is to paint an accurate portrait of the intense spitritual and emotional bond that inevitably exists between a caretaker and young patient after months and of daily contact and care.

I have completed most of my research covering the medical details (symptoms, drugs, etc.) but I am having a difficult time finding the more basic elements of care that a nurse would provide for a child who has been hospitalized with such a disease. I would imagine that specific prodecures vary from care facility to care facility but I would apprecate any information/insight that you could provide. The following areas are the ones in which I am most lacking:

What sort of activities would an adolescent child be involved with during hospitalization?

I understand that many hospitals try to assign a child a particular nurse so that the child can develop a bond and grow more comfortable with that caretaker...what kind of hours would a nurse work during a typical shift and how many of those hours would be spent with a particular child to which he/she was assigned?

What are some of the daily or routine procedures that would be performed by the nurse during the stay?

Thank you in advance for any help that anyone can give...

I work as a pediatric nurse on the neuro/rehab floor of a children's hospital...

I'd be happy to try and respond to some of your questions.

I have worked with many newly diagnosed brain tumor patients including adolescent pts and pts with medulloblastoma and I can tell you it is a very hard thing to do. I love working with this population but at the same time you are faced with your own mortality every day at work. As rewarding as it can be and as much as I love developing relationships with these pts it is hard to come home at the end of the day and know that someone younger than you will probably never see their 18th birthday, never go to prom, never graduate college or have children of their own. This is especially hard for me because I am young (23) and I've recently taken care of 2 21 y/o females who are going home on hospice care. It is easy to relate to them and fun getting to know them, but at the same time, very very sad. It is important to mention also that occasionally there are good outcomes. People, including kids and adolescents beat brain tumors every day. It is amazing to see the resilience and the strength of kids and adolscents.

While caring for these children, I try to remain as positive as possible and treat them as normal as any other adolescent. We talk boys/girls, joke around about movies/TV, I'll bring magazines from home for them, etc. I do not often discuss the future with them but rather discuss life in a hopeful light (someday when I get married, or my kids will be really cute, etc).

Our particular hospital offers a wide variety of things for adolscent pts. We have a teen lounge that has video games, laptop check out, appropriate movie checkout, magazines, etc. We also have a roof top garden that they can visit as well. We do have a child life specialist who provides age appropriate things as well...including movies, board games, video games, magazines, bingo, some nights have life music, celebrities and sports players come and meet people too.

On my floor, we try our best to do continuity of care...meaning we try to have the same nurses take care of the same pts but that doesn't always work. And we work 12 hour shifts (7-7:30) and on my floor our pts go to rehab throughout the day which means they see the same therapists 3 hours in the Am and 3 hours in the PM.

I don't work on the hem/onc floor so I don't know what all the routine things are but I know on our floor things like blood draws are things we do. On the hem/onc floors those pts get chemo and some kids go to a different part of the hospital to get radiation treatments.

I think this kinda answered some of your questions and I hope this helps in your research. Please feel free to email me or reply to this and ask me any other questions.

Thank you so much! That was extremely helpful. I will let you know if i have and more questions. Thanks again!

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